#ChronicMigraine #RheumatoidArthritis #PainAwarenessMonth #ChronicIllness #invisibleillness
#ChronicMigraine #RheumatoidArthritis #PainAwarenessMonth #ChronicIllness #invisibleillness
It’s Trigger Point Injections Day at the Neuro. The injections contain lidocaine and the toxin Serapin. I’ve been getting them for at least 3 years now and I can’t say they are all that effective. My insurance covers the procendure but refuses to cover the cost of Serepin… some bogus reason (as of January). So it’s a $50 out of pocket expense. I schedule them 2 months after Botox because that’s when botox starts to wear off and I’d like something to carry me through the last painful month, waiting for my next botox treatment.
Today was the first day Mary RN didn’t make me wear a hospital gown! Huzzah! Wearing the hospital gown after 7 years of injections is just dumb for me. But it was a nice change to be offered the option!
I get about 20-24 injections… these are some locations. I also get several injections in the temples and jaw.
I’m not sure how much longer I’ll keep up TPI. Like I said, I don’t see it helps me much (and like Occipital Nerve Blocks, it may actually trigger migraine for me?) and the price of Serapin is going up. My neuro does like to see me on several preventatives, though. It’s a chronic migraine thing: it doesn’t really matter if the preventatives are helpful or not. It just looks good… like you’re committed to working on your disorder. Good patient, good boy. (pats dog’s head)
Even though we are having sunny days, the heat is still HOT. And I’m pretty sure it’s triggering my high migraine activity this summer. 100° and humid to 72° degrees air conditioning in less than a minute over and over during the day is too much of a fluctuation for my nervous system.
Mariah Neuro NP hss indicated she was not happy I was on a low dose estrogen topical gel (to help with menopause moodiness and frequent hot flashes) the last several months since my hysterectomy. So… I made the executive call to discontinue the gel about 2 weeks ago. Just to see if perhaps it was a migraine culprit.
Even on the gel, my blood levels of estrogen were zero (so I was barely, if at all, absorbing), but I have noticed I’m having at least 10 hot flashes a day since discontinuing the hormone. So… now I’m having multiple hot flashes a day plus huge environmental temperature changes… are you kidding? My head can’t possible ride this out without bucking and kicking. *This girl* is drenched in sweat, unable to regulate her body temperature and struggling big time!
On Wednesday I visited the dentist and he always enjoys catching up on my migraine journey. I discussed my recent newer symptoms with him… one is sensitivity in the front teeth and the other is red hot forehead.
I’ve mentioned the teeth symptom to Mariah Neuro several times; she says I probably have something wrong with my teeth. (Roll eyes…um, no. My teeth are great) But I’m pretty convinced I’m experiencing some Trigeminal Neuralgia. This is a condition that scares me, and it brings migraine to a whole new level of horrible. Many Chronic Migraineurs also experience TN. My dentist confirmed that the flushing skin is a parasympathetic response. What troubles me is both sympathetic and parasympathetic are related to TN.
Could this forehead flushing and heat be further confirmation that my migraines are collecting another chronic condition of trigeminal neuralgia? Craptastic.
I’ve barely been out of bed for almost a week. My migraines have been driving the car and I’m just holding on tight to the oh shit handle above the passenger door.
Huge news. Huge. Chronic Migraine did not used to be a qualifying diagnosis.
Speaking of disability, I had my hearing in May, 4 months ago. Was approved with back pay to 2015 in June, 3 months ago . Was approved to back pay to 2013 in July, 2 months ago. Waiting to see what August brings. Wait. August is done. Waiting to see what September brings.
Our credit cards are maxed and we need a new car. 2 in college with loans, 2 more going to college in the next 2 years. One getting married in January – sure, we’ll pay for the honeymoon! Lol. It’s so absurd it’s comical. Look how funny we are!! Ha ha ha! Alanis Morissette ironic. I’m afraid our financial situation may cause my husband a heart attack. It surely may cause me to perish from guilt. Either way, we are worth more dead than alive. This was not our life 15 years ago.
People want to help others; it’s amazing and compassionate. And when you tell someone you have Chronic Migraine, they hear migraine… and everyone knows everything about migraine. Most likely because most people have had a migraine in their lifetime or their loved one has. They don’t hear or understand Chronic Migraine. Which is so very different from episodic migraine. For true Chronic Migraine there is NO cure, there is no one method of treatment, and each patient’s experience is so very individual. People do not see or comprehend this ridiculous dark alter life I lead, this half life: the 20 prescription bottles & 10 supplement bottles in my night table, the medication pouch I carry in my purse always, the 15 various ice packs in my freezer, the app on my phone which daily tracks my pain and symptom level. They don’t know about my weekly doctor appointments and current 5 specialist. They don’t know I’ve been willingly injecting my head with hundreds of toxin non-cosmetic injections over the last seven years or that I’ve spent thousands of dollars on alternative medicines over a decade and trialed well over a dozen migraine prevention and abortive medications. They don’t see that I can no longer work my career, grocery shop, work out at the gym, clean my house. They don’t see that I’m a shadow of the person I used to be, a shadow of the mother I used to be. They don’t see the physical toll Chronic Migraine has extracted from my body, the oceans of tears I’ve wept for missed events, missed family moments, excruciating pain and loss. The burden I feel I’ve become to those unlucky enough to love me, and the hours of therapy learning how to cope with a chronic pain condition.
But to be fair, this is true for every single one of us humans. NO ONE has the ability to see the hardships others face… unless we’ve walked in their shoes. Everyone has something.
Last night I made it to a friend’s ladies night get together. This was amazing! I had already been out to lunch with girlfriends for dim sum earlier. I’d been pushing through and medicating a #5 migraine. But I was out of bed and rockin life! Just look at me go! (Perhaps the last 2 days in bed have given me the energy and stamina to conquer Saturday plans?).
The air is like pea soup here… the humidity has that Texas summer slime. Blech. Temps have been at triple digits. Air conditioning is life. I try to stay inside. As I explain to people from the north, this is our winter – staying inside is smart. These conditions are murder for my migraine. This weather is like a huge hill and my brain is peddling the bicycle as robustly as it can, but it cannot get itself over the hill to migraine-relief land. It is a never ending hill. I have 2 choices: •stay in bed or •medicate and be able to move. The medication is just taking that migraine down to #3 but that’s enough to be able to socialize. I’m walking around with a migraine in my right brain and a stinging in my left brain, my eyes feel like hollowed out and heavy sockets, every muscle in my body is sore, every cell is complaining. But I’m showered and dressed. I’m wearing earrings in my ears and rings on my fingers. My hair is brushed and I have makeup on.
I’ve had friends and family tell me they really appreciate the education and experience of chronic migraine that I share on social media; they’ve learned about the stages of migraine, the treatments of chronic migraine, the triggers and the invisible nature. Since I myself didn’t really understand what I was living and experiencing even 7 years ago, I consider it a wonderful testament.
So… I’m at the party last night, sharing a prickly pear margarita with my friend Meg and she introduces me to a new neighbor Kimberly.
My internal dialogue: Remember her name. Kimberly. (I am SO bad at names!) Cute, dainty, beautiful, brunette. I can tell she is thoughtful by her lovely eyes. Petite but not short. I can tell she works out. Very nice, very kind.
We talk about children, how long we’ve lived here, where our houses are, etc. We talk about neighborhood bunco. We topic that Meg and I have both had pelvic prolapse and repair. And then I mention my head. Chronic Migraine. And what happens next is my own fault. No one made me talk about it. I could just skip it. Chronic Migraine isn’t all my life… it’s just a big part. And I’m an open book. So I have trouble shutting up and not sharing. “What’s wrong with your head?” Kimberly asks. I look to Meg and decide to just rip the bandaid, ” Oh I just have chronic migraine.” Throw it out there, throw it away; no big deal. We can just move on. Kimberly asks: “You get migraines?” I look at her and answer yes. She is visibly emboldened: “Come to my house,” she offers, “I have this special CBD oil that is…” But I admittedly don’t really hear the rest. And I am touched she wants me to come to her house. But the alarm sirens are sounding in my brain and my soul is pulling in on itself inside my skin, trying everything to protect itself from assault. I must remember to breathe in and out, center, calm myself. My reaction is swift and jarring. “Yeah,” I cut off Kimberly (ruder than I’d like to be), “I’ve tried so many CBDs. I really wish they helped me.” Kimberly tries to tell me about her CBD with CBG and how it’s different. She tells me the name of the doctor in Houston who endorses this oil. And I think of the bottle I have in my medicine cabinet. The one that has CBD, CBG, and no THC… the bottle that cost me $120 plus shipping. The oil in it has a pleasant citrus taste. I was on it 3-4 months and it did shit. And the other CBD I trialed with THC, and the other CBD I trialed that was specifically for migraines. Oh, and the other CBD – I almost forgot that one…
But I’m coming off as rude to sweet Kimberly and she only wants to help! She’s heard the word migraine and she associates it with: things CBD oil helps. And I’m shifting on my barstool uncomfortably and trying to switch the topic because I’ve opened myself up to the Freak Show that I really am and it’s my own damn fault. Kimberly moves on to gluten: “Have you been tested for gluten sensitivity?” And she’s talking about the metabolic testing. I explain I have been on elimination diets, etc. Meg chimes in about how Botox is the only treatment that’s really helped me. I can read from Meg’s eyes that she knows exactly what’s happening here… and she’s trying to save me. She is one of the most authentic people I have ever met. And apparently she can read me like a book. Am I that obvious?
I need to close this with Kimberly. I appreciate her kindness, her compassion, and her advice. I really do. But she’s misunderstanding. And this is quite possibly the 1000 time someone of the general public has tried to heal me with suggestions.
“I have Chronic Migraine. I’m not triggered by diets and foods. It’s not a physical anomaly. It’s a genetic neurological disorder. I haven’t just been struggling a short time. I’ve had migraine all my life and Chronic Migraine ELEVEN years.”
Eventually she gets it and stops pushing. And then I feel sad. I don’t mean to come off as rude and closed. And I certainly don’t think I am closed to new ideas. I just feel like we are comparing apples and oranges. I can’t possibly expect Kimberly to have a frame of reference for what Chronic Migraine truly is. I’m also left feeling guilty and hoping I haven’t offended a new friend.
Someday maybe I’ll learn a more artful way to deal with Migraine Helpers. Or maybe I’ll just learn to keep my mouth SHUT – not everyone needs to learn about my chronic migraine!
Internal dialogue: Keep it shut, Donna. Just keep it shut. Advocating is a double edged sword. Drink your prickly pear margarita and enjoy some girl time with friends.
#ChronicIllness #invisibleillness #speakyourmigraine #sowingtheseeds
Omg, yesterday happened.
It feels like some sort of nightmarish, abstract event… like a dream. I have memories about it… but I’m not sure if it really happened or someone told me about it. When days like yesterday happen, it’s hard to describe how unreal and horrible they are. And when days like yesterday happen, they shock me, surprise me… like I can’t believe all the migraines I had before that were really migraines… because I’m inside a thunderclap. Migraines like yesterday are being inside a thunderclap. That may be the best way I can describe it.
Yesterday was a big deal. Allow me to set the stage. We had plans: I need footage of my son and his fiance for the wedding video I’m working on. We had set aside the date to go to Pace Bend Park and get drone video footage. I had gone over the details of what I needed in the weeks before with Marc, my awesome hubby and expert drone operator. The day arrived and I woke with my alarm at 9:30. As my eyes opened and I came to consciousness, my heart sank a couple of inches right away, as I could feel migraine. That sting – almost electrical – in my brain… I feel it in the mid brain, in my eyes (like a droop), in my sinuses (which I keep clear with antihistamines). It was a #4 on the migraine scale.
I fed the dogs and made coffee, listening to the migraine… assessing it, judging it and planning how to treat it. This is a common job for me. I’m like, an expert. (Roll eyes)
I took a triptan and said my small prayer (please, medicine… work and don’t give me too many side effects.) and started getting ready. My getting ready routine was not smooth (as is the norm the last several years). After shower, I often need to collapse on the bed before I can get to dressing, makeup, hair, etc. This is chronic illness.
Ken and Courtney arrived early. Which was fine, but Marc and I were so not ready to go. I tried to get the other kids moving, get some breakfast (important not to medicate on an empty stomach). I took more medicine. The triptan was FAILING. Migraine was up to #5-6.
There’s a little panic that starts about this part of the story. Marc was acting weird and distant (focusing on drone? Idk, it’s impossible to get information from him when he’s in this silent stress vortexing zone). At this point, I’m trying to explain to him that my migraine is preventing me from behaving/acting/thinking/working like a normal humanoid. Donna is in trouble; Migraine is taking over.
Admittedly, I’m probably not capable of actually saying these things. (That’s a hard concept for some people to understand. If I were trying to describe it to others, I might say that I am almost becoming another person; my migraine is taking over my person and I am becoming completely disabled).
So… if I were being prudent, I might verbalize to Marc that we should cancel today’s plans. BUT…
1) I cannot do that.
2) I need to live.
3) I need to get certain things accomplished.
4) This has been planned, and
5) I may totally start feeling better with this second round of medication. Right? This makes sense?
6) Marc is with me; he will help me!
Over the next hour we putzed around the house: I couldn’t get the other children to come, I was packing stuff like sunscreen and towels, and Marc was figuring out basic stuff, like, “oh, I need to put on a swim suit!” Even though I’d been walking around in one for hours. My migraine was not relenting. And I was definitely feeling it.
We set off for the half hour drive together. I was starting to act a little migraine manic. Nausea was starting and I had no phenergan with. I started my default conversation: Apologizing Script:
I’m so sorry I get like this. I’m sorry I’m like half a person. I’m sorry I get these migraines all the time. I wish I could be a normal person. I’m so sorry.
To this, my family always respond: No don’t worry, blah blah blah. What they need to be hearing (especially my husband) is that I am not okay right now! I’m disabled and very sick. And I need help!
But he was kinda checked out. So he didn’t hear it. He also didn’t remember a lot of what we discussed the night before; about the footage I’d need and the YouTube video examples I showed him. So that wasn’t helpful.
We arrived at Pace Bend and tried to figure out where to take video/photos. Stepping outside the car was absolute hell. It was 100-degrees with some humidity and very sunny… absolutely murderous weather for a migraine at #6-7. My migraine mania started morphing into wild anxiety… I might even call it terror. But, I didn’t have time for terror. I didn’t have time for any of this.
God knows what I look like during this part of the migraine ride… am I wild-eyed behind my dark sunglasses? Is my voice higher-pitched, do I make any sense? All I know is I’m losing my shit and trying incredibly hard to maintain – something humanoid.
I tried taking more medicine. I was directing Ken and Courtney in all sorts of ways and trying to get video and photos. The drone was completely failing: it was flying off in the light breeze, it wouldn’t connect for video, the controls were worthless. Marc was as silent as the grave, simmering unhappiness and frustration… unable to communicate with anyone. And I was crazy. What a pair. Ken and Courtney were awesome.
I’d have spurts of clear-ish thinking when I could get a shot or organize a sentence. But the nausea and thundering in my brain/body would stop me in my tracks… I’d almost collapse where ever I was.
We spent about an hour and a half trying to get this footage accomplished… and it wasn’t at all what I had envisioned, so I was trying very hard to change my expectations… to create off in a different direction, be flexible.
I was also pretty sure I’d be dead from migraine in moments.
We finally packed up and headed home. Migraine at #9. I couldn’t get myself to vomit. I was pretty sure throwing up would actually make me feel a little relief.
When we got home, I tried unpacking, organizing the mail, saying goodbye to Ken and Courtney. I took a shower and medicated again… this time with the right kind of heavy duty that would induce mini coma. I climbed into bed with ice. It was about 4:30pm.
This is where things get even more hazy. I was editing photos, talking to my kids, eating some dinner, making sure my daughter got to babysitting, texting my brother who’s oldest son got engaged! And I was absolutely NOT myself. Just a disabled crazy person with a migraine #9 waiting for mini coma.
I was OUT by almost 8pm. Things were still happening around me at our busy house. I don’t know if I was making sense. And I was having migraine dreams… which are always vivid and emotional.
I feel so badly that these things are a huge part of me. I spent a huge amount of time talking to Marc today about how it would be beneficial if he could actually hear me when I’m like this… how I cannot really verbalize the truth: I am in trouble.
I woke at 5am still migraining, but down to a #3-4. I took my nightly medications, replaced my ice and went back to sleep. My mascara from the day was still on. Oh well.
The alarm went off at 10am today. We had plans to meet Ken and Courtney and Courtney’s mom at the wedding venue in Bastrop. Still 100-degrees and painful weather. But I will make it. More medication. Cefaly during the drive, push through the symptoms. Push through. Smile. Try and make sense. Apologize for being a freak. This is my life.